Specialist palliative care services (SPCS) have a vital role to play in the global coronavirus disease 2019 pandemic. Core expertise in complex symptom management, decision making in uncertainty, advocacy and education, and ensuring a compassionate response are essential, and SPCS are well positioned to take a proactive approach in crisis management planning. SPCS resource capacity is likely to be overwhelmed, and consideration needs to be given to empowering and supporting high-quality primary palliative care in all care locations. Our local SPCS have developed a Palliative Care Pandemic Pack to disseminate succinct and specific information, guidance, and resources designed to enable the rapid upskilling of nonspecialist clinicians needing to provide palliative care. It may be a useful tool for our SPCS colleagues to adapt as we face this global challenge collaboratively.
Background: International research has shown that healthcare professionals (HCPs) and nonhealthcare professionals (NHCPs) are unaware of the goals and purposes of palliative care. This study evaluates the knowledge of palliative care among a sample of Portuguese adults and correlates their level of knowledge with age, gender, profession, and experience of family member's palliative care.
Method: A cross-sectional online survey was carried out on a sample of 152 HCPs and 440 NHCPs who completed an anonymous questionnaire of sociodemographic, family, and professional data, and an instrument of 26 dichotomous (true or false) questions focusing on palliative care goals and purposes.
Results: The 592 participants had a mean age of 31.3 ± 11.1 years, and most were female. Statistically significant differences between statements considered as correct by HCPs and NHCPs were found in 24 statements; HCPs had the highest percentage of correct answers. The terms most frequently associated with palliative care mentioned by NHCPs were chronic and progressive disease (n = 76), while HCPs mostly mentioned quality-of-life promotion (n = 29). Women, the elderly, and HCPs had a higher level of knowledge regarding palliative care (p < 0.001).
Conclusions: Results clearly show gaps in knowledge of palliative care, especially among NHCPs. An integrated approach is needed to inform and clarify the philosophy and goals of palliative care in different settings in order to improve knowledge.
Le respect de l’autonomie du patient est essentiel. Il peut rédiger des directives anticipées en vue d’une situation où il ne pourrait plus s’exprimer. Actuellement, peu de personnes les ont rédigées. Nous avons réalisé une étude sur la faisabilité de la mise en place systématique des directives anticipées chez des patients hémodialysés. Cette étude prospective monocentrique a été menée dans un centre d’hémodialyse ambulatoire en 4 étapes : un questionnaire remis aux soignants ; la sélection puis l’information des patients ; la rédaction assistée des directives anticipées par les patients intéressés ; l’évaluation des causes de non-participation. Les soignants connaissent mal le dispositif et ont des réticences : le manque de connaissances médicales du patient, l’angoisse générée par la discussion sur la fin de vie. Cinquante-six patients (51,6 %) ont été inclus et ont reçu les informations. Neuf d’entre eux ont souhaité rédiger leurs directives anticipées sur un formulaire adapté, huit les ont finalisées (7,4 % de la population initiale). La majorité souhaitait une limitation thérapeutique. Vingt-neuf patients ayant reçu l’information n’ont pas souhaité les rédiger, les raisons étant : ils se sentent bien ou pensent que leurs proches prendraient les bonnes décisions. Dix-huit patients sont sortis du centre pendant l’étude. Le développement des directives anticipées nécessite l’information et la formation des soignants, ainsi que l’accompagnement des patients. Peu de patients sont allés au bout de la démarche. La limite de la « compétence » du patient à décider pour lui est difficile à définir. Le rôle du médecin est central pour l’accompagner.
Euthanasia is undoubtedly the protagonist of many of the debates around the end of life both among health staff and in the general population. Considering that nurses provide care for terminally ill patients and support families and patients in their final days, it is essential to know their attitudes towards euthanasia. The aims of the study were to adapt and validate the Attitude Towards Euthanasia scale to a Spanish context, to test the dimensionality and to estimate the reliability of the scale. A cross-sectional study was conducted with a non-probabilistic sample of Spanish health-workers of 201 in a University Hospital in Ciudad Real. A self-reported socio-demographic questionnaire and the Euthanasia Attitude Scale were used for data collection. The psychometric properties of the scale were assessed, including reliability and validity using an exploratory and confirmatory factor analysis. Cronbach’s alpha of the Attitude Towards Euthanasia scale was a = 0.827 and McDonald’s Omega = 0.903. The range of items of homogeneity was from 0.205 to 0.685. For the different exploratory factor analyses carried out, the Bartlett’s test of sphericity was p < 0.001 and the sample index value of Kaiser-Meyer-Olkin was over 0.802. in all cases. We present the factorial weights for three models: The first one assumes a unidimensional solution, the second model was composed by three factors and the third model was composed by four factors. In the confirmatory factor analysis, the three models presented an acceptable fit index. The Attitude Towards Euthanasia scale adaptation to a sample of Spanish health workers has shown, with some limitations, appropriate psychometric properties. There have been several differences between the original factorial solution. It would be necessary to replicate the study to reinforce the findings about the number of factors of the scale.
Background: We sought to evaluate how Muslim allied healthcare professionals view death by neurologic criteria (DNC).
Methods: We recruited participants from two listservs of Muslim American health professionals to complete an online survey questionnaire. Survey items probed views on DNC and captured professional and religious characteristics. Comparative statistical analyses were performed after dichotomizing the sample based on religiosity, and Chi-squared, Fisher’s exact tests, likelihood ratios and the Kruskal–Wallis test were used to assess differences between the two cohorts.
Results: There were 49 respondents (54%) in the less religious cohort and 42 (46%) in the more religious cohort. The majority of respondents (84%) believed that if the American Academy of Neurology guidelines are followed and a person is declared brain dead, they are truly dead; there was no difference on this view based on religiosity. Less than a quarter of respondents believed that outside of organ donation, mechanical ventilation, hydration, nutrition or medications should be continued after DNC; again, there was no difference based on religiosity of the sample. Importantly, half of all respondents believed families should be able to choose whether an evaluation for DNC is performed (40% of the less religious cohort and 60% of the more religious cohort, p = 0.09) and whether organ support is discontinued after DNC (49% of both cohorts, p = 1).
Conclusions: Although the majority of allied Muslim healthcare professionals we surveyed believe DNC is death, half believe that families should be able to choose whether an evaluation for DNC is performed and whether organ support should be discontinued after DNC. This provides insight that can be helpful when making medical practice policy and addressing legal controversies surrounding DNC.
Background: Communication and shared decision-making (SDM) are essential to patient-centered care. Hospital-based palliative care with patients with limited health literacy (LHL) poses particular demands on communication. In this context, patients’ emotions and vulnerable condition impact their skills to obtain, understand, process and apply information about health and healthcare even more. If healthcare providers (HCPs) meet these demands, it could enhance communication. In this study, HCPs were interviewed and asked for their strategies, barriers and suggestions for improvement regarding communication and SDM with LHL patients in hospital-based palliative care.
Methods: qualitative interview study was conducted in 2018 in four Dutch hospitals with 17 HCPs—11 physicians and 6 nurses. Transcripts were analyzed using thematic analysis.
Results: In general HCPs recognized limited literacy as a concept, however, they did not recognize limited health literacy. Regarding SDM some HCPs were strong advocates, others did not believe in SDM as a concept and perceived it as unfeasible. Furthermore, five themes, acting as either strategies, barriers or suggestions for improvement emerged from the interviews: 1) time management; 2) HCPs’ communication skills; 3) information tailoring; 4) characteristics of patients and significant others; 5) the content of the medical information.
Conclusions: According to HCPs, more time to communicate with their patients could resolve the most prominent barriers emerged from this study. Further research should investigate the organizational possibilities for this and the actual effectiveness of additional time on effective communication and SDM. Additionally, more awareness for the concept of LHL is needed as a precondition for recognizing LHL. Furthermore, future research should be directed towards opportunities for tailoring communication, and the extent to which limited knowledge and complex information affect communication and SDM. This study provides first insights into perspectives of HCPs, indicating directions for research on communication, SDM and LHL in hospital-based palliative care.
Background: Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals’ perspectives.
Methods: A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions.
Results: Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams.
Conclusions: Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.
Context: Managing the care of an increasing and aging prisoner population, including providing palliative and end-of-life care, is a challenge worldwide. There is little known about the views of health professionals who provide palliative care to hospitalized prisoner patients.
Objectives: To explore experiences and perspectives of health professionals regarding the provision of palliative and end-of-life care for hospitalized prisoner patients.
Methods: A qualitative study involving semistructured focus groups and interviews with 54 medical, nursing, and allied health staff engaged in the care of hospitalized prisoner patients. Purposive sampling from a metropolitan teaching hospital responsible for providing secondary and tertiary health care for prisoners in Victoria, Australia, for 40 years was used to identify and seek perspectives of staff from a variety of clinical disciplines. Inductive thematic analysis was conducted by two researchers.
Results: Participants described significant constraints in how they provide palliative care to hospitalized prisoners. Key themes emerged describing constraints on prisoner health decisions, provision and place of care, patient advocacy, and how care is delivered in the last days of life. Participants highlighted a deep philosophical tension between prison constraints and the foundational principles of palliative care.
Conclusion: Clarity of correctional service processes, protocols, and aspects of security and related training for health professionals is needed to ensure improved care for prisoners with progressive and life-limiting illness. Further research is required to seek the views of prisoners facing end of life and their families.
Background: Decisions of withholding or withdrawing life sustaining-treatments in emergency department are part of current practice but the decision-making process remains poorly described in the literature.
Study objective: We conducted a study in two phases, the first comprising a retrospective chart review study of patients dying in the ED and the second comprising survey study of health care workers at 10 urban emergency departments in France.
Method: In a first step, we analyzed medical records based on fifteen criteria of the decision-making process grouped into four categories: the collegiality, the traceability, the management and the communication as recommended by the international guidelines. In a second step, we conducted an auto-administrated survey to assess how the staff members (medical, paramedical) feel with the decision-making process.
Results: There were 273 deaths which occurred in the ED over the study period and we included 145 (53.1%) patients. The first-step analysis revealed that the traceability of the decision and the information given to patient or the relatives were the most reported points according to the recommendations. Three of the ten emergency departments had developed a written procedure. The collegial discussion and the traceability of the prognosis assessment were significantly increased in emergency department with a written procedure as well as management of pain, comfort care, and the communication with the patient or the relatives. In the second-step analysis, among the 735 staff members asked to take part in the survey, 287 (39.0%) answered. The medical and paramedical staff expressed difficult experience regarding the announcement and the communication with the patient and the relatives.
Conclusion: The management of the decision to withhold or withdraw life-sustaining treatments must be improved in emergency departments according to the guidelines. A standard written procedure could be useful in clinical practice despite the lack of experienced difference between centers with and without procedures.
The concept of a good death is crucial in palliative care, but its relationship with attitudes toward death and feelings of interconnectedness needs to be further deepened. The first aim of this study was to explore the concept of good death, attitudes toward death, and feelings of interconnectedness among family caregivers (FCs) and health-care providers (HCPs) of terminally ill patients with cancer. The second aim was to analyze associations of good death concept with attitudes toward death and feelings of interconnectedness. Participants were asked to assess the importance of features that characterize a good death. To explore each person's attitude toward death and feelings of interconnectedness, 3 open questions were used. The sample consisted of 49 participants: 24 (48.98%) FCs and 25 (51.02%) HCPs. Nine good death features were considered essential by more than 70% of participants. These referred to the physical (eg, symptoms control), social (eg, loved ones' presence), emotional (eg, sharing emotions), and spiritual (eg, inner peace) dimensions. Importance attributed to components of a good death such as patient's awareness and acceptance of death, meaning, respect for the patient's wishes, and inner peace were found to be associated with lack of avoidance and acceptance toward death and feelings of interconnectedness. Given the importance of FCs and HCPs in providing care and their impact on the patients' dying process, it is necessary to reflect upon how their personal attitudes and previous experiences influence the care of dying patients.
Dignity is a core topic within palliative care, and thus, it is important to get a detailed assessment of healthcare providers’ (HCPs) perspectives on this subject. This study aimed to explore various HCPs’ perspectives on end-of-life patients’ dignity by collecting different testimonies about what dignity entails and which strategies HCPs use to maintain patients’ dignity. A sample of 104 participants was interviewed using two open questions to collect qualitative data. Content analysis was performed to identify the central themes among answers. Regarding the first question (“What comes to your mind when I say “Dignity” in relation to your patients?”), nine themes emerged. The majority sampled stated that dignity means respecting the patient by considering him/her as a person in his/her entirety. Two other themes frequently emerged: “Respect the patient’s will/wishes/needs” and “Self-determination/Self-expression.” Concerning the second question (“Which strategies do you use to maintain patients’ dignity?”), seven themes emerged. The “Caring skills” theme was most frequently identified, followed by “Empathic skills” and “Professional strategies.” This study has enabled a better understanding of HCPs’ perspectives on end-of-life patients’ dignity. Through the interviews, HCPs were given an opportunity to reflect on dignity, possibly helping them improve their understanding of their patients’ conditions and promote higher quality of care.
Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional. Studies are needed to investigate this issue.
Aims: The purpose of this study was to reveal difficulties experienced by a nurse family caregiver offering care to a family member diagnosed with end-stage cancer and how she coped with these difficulties.
Methods: This was an autoethnographic study.
Findings: Findings were grouped under three headings: being both a researcher and a subject; effects of caregiving; and coping.
Conclusions: Offering care to a cancer patient has many physiological and psychological effects. If a family caregiver is a health professional, his/her caregiving burden can be even higher. Cultural values affect both life and coping ways of caregivers. It should be kept in mind that family caregivers need support from health professionals whatever their occupations are. Support to caregivers plays an important role in their coping.
Au coeur de l'accompagnement en soins palliatifs la question du temps et de la temporalité de chacun prend toute son importance. Il y a de nombreuses manières d'exprimer le passage du temps d'une personne et d'un moment à l'autre. "Au jour le jour", disent souvent les patients. "A toute à l'heure", promettent les soignants. Quant aux familles, elles éprouvent souvent le temps qui reste à vivre dans l'angoisse et l'ambivalence. Pour le psychologue il s'agit de concilier toutes les perceptions et d'en révéler la cohérence.
Background: Concerns regarding personal, professional, administrative, and institutional implications of medical assistance in dying (MAiD) are of particular interest to palliative and hospice care providers (PHCPs), who may encounter additional moral distress and professional challenges in providing end-of-life (EOL) care in the new legislative and cultural era.
Objective: To explore PHCPs' encountered challenges and resource recommendations for caring for patients considering MAiD.
Design: Qualitative thematic analysis of audio-recorded semistructured interviews with PHCPs.
Setting/Subjects: Multidisciplinary PHCPs in acute, community, residential, and hospice care in Vancouver, Canada, with experience supporting patients who have made MAiD inquiries or requests.
Measurements: Interviews were deidentified, transcribed verbatim, and coded by four researchers using a common coding scheme. Key themes were analyzed.
Results: Twenty-six PHCP participants included physicians (n = 7), nurses (n = 12), social workers (n = 5), and spiritual health practitioners (n = 2). Average interview length was 52 minutes (range 35–90). Analysis revealed four broad challenges associated with providing EOL care after MAiD legalization: (1) moral ambiguity and provider distress, (2) family distress, (3) interprofessional team conflict, and (4) impact on palliative care. Participants also recommended three types of resources to support clinicians in delivering quality EOL care to patients contemplating MAiD: (1) education and training, (2) pre- and debriefing for team members, and (3) tailored bereavement support.
Conclusions: PHCPs encountered multilevel MAiD-related challenges, but noted improvement in organizational policies and coordination. Resources to enhance training, pre- and debriefing, and tailored bereavement may further support PHCPs in providing high-quality EOL care as they navigate the legislative and cultural shifts.
Ce rapport avait pour objectif de guider l'action et le questionnement professionnels pour permettre le respect maximal des volontés liées à la fin de vie et un accompagnement le plus humain possible de la personne et des proches. Voici les résultats obtenus par le groupe de travail :
- Anticiper les situations de fin de vie en favorisant les échanges et en s’appuyant au maximum sur les ressources disponibles que ce soit au sein des équipes ou avec les partenaires du territoire.
- Informer et communiquer régulièrement sur les actions mises en œuvre, les adaptations qui s’imposent en période d’épidémie et les évolutions possibles des situations de fin de vie dont le décès.
- Garantir le confort de la personne et respecter les souhaits de chacun tout en prenant des décisions partagées lorsque des arbitrages s’imposent.
- Maintenir le lien avec les proches et l’entourage et leur apporter un soutien lors de la survenue du décès.
- Soutenir l’ensemble des professionnels dont la charge émotionnelle s’est accentuée.
- Préparer le deuil en offrant la possibilité aux personnes accompagnées et aux professionnels de partager un geste un moment, en mémoire de la personne.
Bien que prévu par la loi et quels qu’en soient les motifs, le refus de soins émanant du patient déstabilise les soignants. Pour ces derniers, il est important de comprendre les attitudes vis-à-vis de ce refus, les liens avec les pratiques professionnelles afin de proposer des repères pour une démarche clinique.
Purpose: St. Gabriel’s Hospital (SGH) in Namitete, Malawi, has a Home-Based Palliative Care program of 60 community health workers (CHWs) to support rehabilitation work. Over 5 years, these CHWs received support through annual rehabilitation training programs. The study explores the nature of the CHWs’ roles and factors affecting the program’s sustainability.
Subjects: Participants were home-based palliative care CHWs at SGH (n = 60).
Methods: This is a mixed-methods study including qualitative and quantitative data and analysis methods. Data were collected from training surveys, focus group discussion material, field and home-visit observation checklists.
Results: Results showed that 59% of the CHWs traveled = 5 km to visit patients. 100% of the 57 patients had participation restrictions. Following trainings, 93.3% of the CHWs felt more prepared. Qualitative analysis revealed four themes: (1) Empowerment and Motivation; (2) Barriers to care; (3) Communication and Network; (4) Scope of practice and Self-Perception of impact.
Conclusion: This study illuminated important aspects of the CHWs’ work: empowerment through training, burden of travel, and altruism. Future studies could include impact of CHW-to-caregiver training, patient outcome measures following care, and future training needs.
Significance: This study provides a unique perspective of the successes, barriers, and motivations of home-based CHWs in Malawi.
Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams.
Methods: CF care team members (“clinicians”), adults with CF (“patients”), and family caregivers (“caregivers”) rated the ability of CF clinicians to provide aspects of PC using a five-point scale (“poor” to “excellent”). Median ratings were compared between groups.
Results: A total of 70 patients, 100 caregivers, and 350 clinicians participated. Clinicians consistently rated their PC skills higher than patients or caregivers rated them, particularly for advanced PC skills. While clinicians, patients, and caregivers rated clinicians as “very good” at basic pain assessment and “good” at discussing prognostic uncertainty, clinicians rated themselves more highly at providing most skills, including simultaneous PC and standard CF care (P < .0001), basic depression assessment (P < .001), and discussing transplant, advance directives, end of life, code status, and hospice (all P < .0001). Respondents affiliated with adult CF care teams rated clinicians more highly than respondents affiliated with pediatric CF care teams at discussing lung transplant (P < .001), end of life (P = .006), advance directives (P < .001), code status (P = .012), and hospice (P = .016). Most patients (69%) and caregivers (60%) felt CF clinicians should receive more PC training.
Conclusions: Discrepancies exist among patient/caregiver and clinician perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. Patients and caregivers feel clinicians’ more advanced PC skills are lacking. CF clinicians may benefit from PC training to enhance skills and to understand how and when to utilize specialty PC services.
The availability of willing providers of medical assistance in dying (MAiD) in Canada has been an issue since a Canadian Supreme Court decision and the subsequent passing of federal legislation, Bill C14, decriminalised MAiD in 2016. Following this legislation, Hamilton Health Sciences (HHS) in Ontario, Canada, created a team to support access to MAiD for patients. This research used a qualitative, mixed methods approach to data collection, obtaining the narratives of providers and supporters of MAiD practice at HHS. This study occurred at the outset of MAiD practice in 2016, and 1 year later, once MAiD practice was established. Our study reveals that professional identity and values, personal identity and values, experience with death and dying, and organisation context are the most significant contributors to conscientious participation for MAiD providers and supporters. The stories of study participants were used to create a model that provides a framework for values clarification around MAiD practice, and can be used to explore beliefs and reasoning around participation in MAiD across the moral spectrum. This research addresses a significant gap in the literature by advancing our understanding of factors that influence participation in taboo clinical practices. It may be applied practically to help promote reflective practice regarding complex and controversial areas of medicine, to improve interprofessional engagement in MAiD practice and promote the conditions necessary to support moral diversity in our institutions.
BACKGROUND: Many domiciliary care workers have reported low confidence and isolation when delivering end of life care in patients' homes. Project Extension for Community Healthcare Outcomes (ECHO) is an initiative that has demonstrated success in increasing confidence and knowledge of end of life care in UK nursing home and community hospice workers, but it has not been evaluated with domiciliary care workers.
AIM: To test the acceptability of Project ECHO to domiciliary care workers as a means of increasing their knowledge of, and confidence in, delivering palliative care, and its effectiveness in reducing their isolation by developing a community of practice.
METHOD: A service evaluation, involving one domiciliary care agency delivering care in the community, was conducted from May 2018 to April 2019. The participants were 25 home care workers who were employed by the agency. Participants were invited to attend an event at which gaps in their knowledge were identified, and a curriculum of learning on the Project ECHO programme was developed. The learning involved 12 educational sessions over 12 months, with each session teaching a different component of palliative care. Questionnaires were completed by the participants before and after the educational sessions to assess their effect. In addition, a focus group was conducted with four of the participants.
RESULTS: Comparison of the questionnaires completed before and after participating in the education sessions revealed an increase in self-reported knowledge across all 12 topics of the curriculum and an increase in confidence in seven of the 12 topics. However, attendance across the 12 sessions was variable, with no more than nine being attended by any one participant.
CONCLUSION: Palliative care education for domiciliary care staff using ECHO methodology was well received, relevant and accessible, and may have the potential to improve self-assessed knowledge and confidence. However, finding an ideal time for as many staff to attend as possible may be challenging.